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Helping families navigate the NICU Journey, one miracle at a time.

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Brynlee

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Brynlee was born May 9th, 2016 with coarctation of the aorta (narrowing of the aorta). Within hours of birth, she was transported from Wausau, WI to American Family Children’s Hospital in Madison, WI for surgery. She was born on a Monday, and I had a c-section, it was that Friday before I was released from the hospital and was able to make the trip to Madison to be with her.

For four days, I was stuck recovering in Wausau while our baby went to the amazing doctors and nurses in Madison. When we finally arrived in Madison, we began to learn Brynlee’s fate. The plan was to wait two more weeks and then perform surgery on her heart that would temporarily fix her aorta through a thoracic (rib) entry. As we waited for the surgery, a central line administered medication that was keeping her aorta from closing and ultimately putting her life at risk.

In the days to come, tests were performed and it was discovered that she would need additional surgeries before they could even perform the heart surgery-they needed to repair an inguinal and diaphragmatic hernia.

While she recovered from these surgeries, the medication to keep her aorta open stopped working and the heart surgery became emergent. Once the surgery began, it became apparent to the surgeon that he could not do the repair due to damage that her lung sustained when her liver perforated the diaphragmatic hernia. 2 ½ hours in, they came to get our permission to flip her over, place her on bypass and complete the much more risky, but permanent fix. The cardiac surgery team ended up performing a 9 hour amazing surgery that ultimately rebuilt the entire arch of her aorta, she was 10 days old. Post surgery, due to severe lymphedema due to the Turner Syndrome she was born with, her chest had to remain open for 5 days.

Brynlee spent 6 weeks total in the hospital, I lived there with her, back and forth between the UW hospital and the Ronald McDonald house in Madison. There were surgeries that ensued after the heart surgery, including chest closure and ultimately a G-tube surgery so we could come home, Brynlee has a high arched pallet and could not bottle feed at the time.

Fast forward, many hurdles and delays later, Brynlee is a thriving, HEALTHY happy 3 year old. TS will always be part of her life and she has annual check ups with a variety of specialty Drs. We are blessed to be her parents and so incredibly grateful!

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